The Operating Committee consists of the Chair and Vice Chair of the Consortium Assembly, the Chairs or Vice Chairs of the Constituent and Scientific Committees, and the Scientific Secretariat.
The Operating Committee meets regularly to prepare and advance IRDiRC activities, process information, and enable more effective management of the consortium as a whole.
| Name | Function within IRDiRC | Title and Organization | |
|---|---|---|---|
 | David Pearce | Chair Consortium Assembly | Professor, Department of Pediatrics at Sanford School of Medicine at University of South Dakota, USA |
 | Samantha Parker | Vice Chair Consortium Assembly | Patient Advocacy and Communication Lead Rare Disease Europe, ITALFARMACO, France |
 | Christopher McMaster | Chair Funders Constituent Committee | Scientific Director, Canadian Institutes for Health Research (CIHR), Canada |
 | Stefano Benvenuti | Vice Chair Funders Constituent Committee | Head of Public Affairs, Telethon Foundation, Italy |
 | Vinciane Pirard | Chair Companies Constituent Committee | Lead Scientific Advocacy and Insights - Global Medical Affairs Rare Diseases at SANOFI, Belgium |
 | Adriana Huertas-Vazquez | Vice Chair Companies Constituent Committee | Senior Director, Global Medical Affairs at Illumina, USA |
 | Kelly du Plessis | Chair Patient Advocates Constituent Committee | Member, Rare Diseases International, South Africa |
 | Samuel Agyei Wiafe | Vice Chair Patient Advocates Constituent Committee | Founder/Executive Director Rare Disease Ghana Initiative (RDGI), Ghana |
 | Sally Ann Lynch | Chair Diagnostics Scientific Committee | Consultant Clinical Geneticist, Children's Health Ireland, Ireland |
 | Clara van Karnebeek | Vice Chair Diagnostics Scientific Committee | Professor of Pediatrics & Biochemical Genetics, Emma Center for Personalized Medicine, Amsterdam UMC, The Netherlands |
 | Gareth Baynam | Chair Interdisciplinary Scientific Committee | Medical Director at Rare Care Centre, Perth Children’s Hospital, Australia |
 | Marc Dooms | Vice Chair Interdisciplinary Scientific Committee | Senior Pharmacist at University Hospitals Leuven, Belgium |
 | Daniel O'Connor | Chair Therapies Scientific Committee | Director, Regulatory Policy and Early Access, The Association of the British Pharmaceutical Industry (ABPI), UK |
 | Anneliene Jonker | Vice Chair Therapies Scientific Committee | Assistant Professor, Rare Diseases Therapeutic Innovation, University of Twente & Scientific Director, Duchenne Parent Project, The Netherlands |
 | Violeta Stoyanova-Beninska | Chair Regulatory Scientific Committee | Senior Scientific Specialist at European Medicines Agency, Netherlands |
 | Oxana Iliach | Vice Chair Regulatory Scientific Committee | Senior Director Regulatory Strategy, Certara, Canada |